Members of the Australian Childhood Deafness Community Advisory Group were privileged to attend this year’s this year’s Australasian Newborn Hearing Screening (ANHS) Conference. Reflections by Jermy Pang and Emily Shepard.
The Advisory group, known as ChildDeafness-CAG, is comprised primarily of parents and carers of children and young people who are deaf or hard of hearing. We write this piece to share how meaningful inclusion of lived experience at scientific meetings like the ANHS Conference can enrich the entire community — from scientists and clinicians to policymakers and families.
The Community Advisory Group’s Role
Our AusChildDeafness-CAG was formed under the auspices of an NHMRC-funded initiative known as ANCHOR (Australian National Child Hearing Health Outcomes Registry), based at the Murdoch Children’s Research Institute (MCRI). This research project aims to develop Australia’s first unified dataset to track long-term outcomes for children and young people who are deaf or hard of hearing, from birth through to 26 years of age. The goal is ambitious yet essential: to better understand what works, what doesn’t, and how to improve hearing health outcomes across the lifespan.
From the outset, ANCHOR has placed family voices at the centre. The AusChildDeafness-CAG was established to ensure the lived and living experience of navigating childhood deafness informs research questions, design, and interpretation. It’s a collective of parents and carers from diverse backgrounds — some of us have walked alongside our children through cochlear implants, hearing aids, Auslan education, and mainstream schooling; others through complex health or developmental needs. What unites us is a deep well of insight and a shared determination to drive better futures for deaf and hard of hearing children.
Space for Families
Scientific conferences can be daunting for non-academic participants. The ANHS Conference could have easily followed the traditional format, prioritising data-heavy presentations and expert panels. But instead, its organising committee — a collaborative effort between a parent advocate alongside researchers, and clinical professionals — deliberately made space for lived experience.
From the earliest planning stages, members of the AusChildDeafness-CAG were encouraged to submit abstracts and share their lived experiences at the ANHS Conference. Emily Shepard, CEO of UsherKids Australia and co-chair of the AusChildDeafness-CAG, also served as a parent representative on the ANHS conference organising committee. In this dual role, she helped shape the program to ensure parent and family narratives were recognised as a vital source of knowledge. Her contribution supported a co-design approach that valued not only clinical and research expertise, but also the deep insights that come from lived experience and family perspectives.
Importantly, several CAG members and other parent/carer delegates were financially supported by the ANCHOR research team to attend the conference in person. None of this would have been possible without the foresight and inclusive intent embedded in the original grant planning — funding and budgeting that recognised the importance of enabling community participation, not just professional attendance. It was more than logistical support; it was a public demonstration that parent voices are not only welcome, but necessary.
The conference also took meaningful steps to ensure Auslan interpreting and live captioning were consistently provided across sessions – ‘walking the talk’ on inclusive practice.
Inclusion in Action
So, what does genuine inclusion look like at a scientific gathering? For us, it began with a pre-conference preview session. This allowed parent delegates to familiarise themselves with the program and venue layout (like you would a social story at a gallery or museum space), learn conference jargon, and understand what to expect — a small but powerful step in building confidence, comfort and psychological safety.
Throughout the event, CAG members and parent attendees stayed connected via regular check-ins and informal social gatherings. These moments of camaraderie helped ground us. Scientific content can sometimes be emotionally charged — especially when you’re hearing about outcomes, statistics, or challenges that mirror or misalign with your own family’s story. Being able to debrief with others who “get it” made the experience feel safe and supportive.
Several parents were invited to share their families’ hearing journeys and identity. Our voices were front and centre in the ANCHOR parent workshop. Together, the parental narratives brought the science to life, reminding attendees that behind every dataset is a child, a family, and a future.
Many of us had only ever met online before — part of a new generation of digitally connected advocacy — and this in-person gathering allowed us to deepen relationships, celebrate each other’s work, and forge new collaborations.
Value of Lived and Living Experience
For researchers and clinicians, parent input offers context, nuance, and accountability. It bridges the gap between evidence and clinical application. Our presence sparked spontaneous conversations about system barriers, service inequities, and what meaningful outcomes actually look like in the day-to-day lives of deaf children and their families.
Parents learned about emerging technologies, research frontiers, and policy directions. We gained insights we can take back to our communities. And we saw first-hand how our stories — our ordinary, messy, powerful lived experiences — have the potential to shape the future of hearing health in Australia.
Crucially, our inclusion spoke directly to the spirit of this year’s ANHS Conference theme: Futures and possibilities: Opportunities and Challenges. The presence of parent and carer delegates embodied the opportunities that come from partnership and co-design, reminding all participants that the challenges ahead must be tackled together, with families at the table.
Final Reflections
This conference experience affirmed a vital truth: lived experience is not an optional extra in health research — it is a cornerstone. When parents and carers are invited into scientific spaces not as guests but as collaborators, the results are richer, more grounded, and more relevant.
There is still much to do. But if the ANHS Conference showed us anything, it’s that the path to better outcomes begins with engaging those who this research serves – and that is the living experience experts – at the very centre.
For more information about the ANCHOR Research Study, visit: ANCHOR: Australian National Child Hearing Health Outcomes Registry – Murdoch Children’s Research Institute